“We’ve never heard when and how they would do a long-term follow-up. Kolon Life Sciences said it held a meeting with patients for better communication, but the meeting was for 10 people only. What kind of communication is that?”

So said a patient who received the treatment of Invossa-K, now-suspended gene therapy for osteoarthritis by Kolon Life Sciences, venting his anger.

Other patients treated with Invossa are also expressing fury. It has already been almost six months since the government banned the sale of Invossa for mislabeling of its cell ingredient. However, Invossa-treated patients are still worrying about uncertain risks of the drug, cut off from the communication with the government and the company.

Law firm Oh Kims and Association of Physicians for Humanism (APH) offer health counseling and an epidemiological study for Invossa-treated patients at JU Youth Center in Seoul, on Sunday.

The Ministry of Food and Drug Safety’s long-term follow-up study on Invossa-treated patients has not begun yet. Since the ministry’s announcement on April 15, the research is still in the stage of registering patients. As of Sept. 3, about 75 percent of Invossa-treated patients have been registered at the Korea Institute of Drug Safety and Risk Management. The ministry estimates the number of patients who received Invossa to be 3,014, but it has yet to identify the accurate number.

The company’s meeting with patients for communication was too small, considering that more than 3,000 patients received Invossa treatment. The company promised to listen to patients’ concerns, but the meeting on Aug. 13 allowed only over 10 patients to attend. The meeting on the following day was also open to several people only.

Patients said neither the government nor Kolon kept their promises, and that the patients had to take care of the unknown risks of Invossa treatment.

Law firm Oh Kims decided to represent the patients and offered health counseling and an epidemiological study for the patients at JU Youth Center in Seoul, Sunday, jointly with the Association of Physicians for Humanism (APH).

To receive a consultation, patients started to visit the center from 9 a.m., Sunday. More than 100 patients visited the center until 6 p.m. The patients divided into 10 groups of 10 people and had one-on-one counseling and examinations. After conducting an epidemiological study for 20 to 30 minutes based on the survey questionnaire, a specialist consulted the patients for symptoms for 10 to 20 minutes individually.

The event provided legal counseling for Invossa-treated patients’ lawsuit against the company. Ten medical specialists from rheumatology, rehabilitation, internal medicine, family medicine and psychiatry, and five law specialists in claims for damages in the healthcare sector participated in the consultation.

Jeong Hyeong-joon, secretary-general of the Association of Physicians for Humanism (APH), said he and his colleagues began to offer consultation to patients because their demand was too strong to ignore, while the Ministry of Health and Welfare and Kolon Life Sciences “did not do anything.”

“The patients were very anxious about their health and many cases showed serious side effects after Invossa treatment,” he said.

Another patient, who was treated with Invossa in January, had to undergo surgery several times for cataracts and glaucoma, due to eye diseases caused by acute shingles.

“My doctor told me that it seemed like a complication caused by Invossa. So I went to a university hospital last year and got hospitalized three times,” said the patient, who suffered cancer in the past. In the investigation for the mental status, the patient said he was often scared and frequently suffered from indigestion.

A third patient was receiving psychiatric counseling under extreme stress. He was particularly angry because he felt alienated from the government or the company.

“The doctor who treated me with Invossa left the hospital so I couldn’t get proper counseling. I didn’t hear anything about the long-term follow-up either, so I came here,” he said. “When the government says it will do this, or the company says it will talk, I feel like they are just on a show.”

Oh Kims and APH said they would analyze the result of the epidemiological study and compare it with existing results of the phase-3 trial on Invossa.

“Analyzing the epidemiological study of more than 100 patients and providing statistically meaningful results may help patients’ litigation in the future,” said Eom Tae-seob, a lawyer at Oh Kims.

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